Very Disappointed With My Visit To One Of The Major Clinics And The Doctor That I Saw Here.

[Gemma]

Hi, everyone I really need your support. I traveled to this clinic this week for some testing and to see a neurology doctor who specializes in POTS. My husband drove me here and it took us 15 hours to get here, a lot of expenses for hotel and fuel, plus his time off work. Today was my first day of testing. They did autonomous testing in the morning, then after that QSART test, then I met with the dr. She said my tests showed negative and that my blood pressure is border line, said nothing about the fact that I said usually my HR goes above 110 in mornings. She said that based on my testing it doesn't look like i have POTS or in fact autonomic dysfunction at all. She didn't really suggest anything besides drink water and salt tablets, which i was already doing for so long. Also, didnt bother discussing any medicines with me. When i tried asking her a question, she stopped me and said "let me finish first", which was very rude. She didn't even bother ordering the cathecholins (don't know the spelling) supine and standing blood work, even though my refering doctor checked that test on order form. After i asked her, she said ok, i will order it, but not really needed. Also, i asked to check my iron level and she said that my primary doctor needs to do it.
Then i mentioned to her my chest pain, and overall muscle pains, but she just ignored it. For my chronic cough, she said to see pulmonologist. I said i already saw 2 pulmonologists in PA where i live and woud like to see one at vanderbilt and also want to see cardiologist. I asked her to refer me to see them while i stay in the clinic, but she said no and when i asked why, its not done this way here, my primary doctor needs to refer. I said but if my primary refers they will not be able to see me in these 3 days while I am at Vanderbilt, but if she refers they can get me an appointment, but she said no.

Please help anyone who sees this massage. I came to my hotel room now and basically sit and cry. I am more confused then before i came here. All this time I was told I have POTS, but today this dr said I do not have it. Also, when i was driving here the woman that sat up all my appointments said that if the doctor will tell me I need to see someone else, the will try to get me an appointment while I am at the clinic. I still have two days here because on friday they are doing blood volume test, tomorrow I have no appointment at all. I am still happy I came because of all the testing, but i thought i would be able to get more information as to why I am feeling like this for past 1.5 years, plus I thought maybe I would be able to see other specialists. Can someone recommend how I can try to get those appointments. Also, is it common to see a doctor in such big clinics who are considered the best and to be treated this way. Can I ask to speak or see a different doctor while I am here, or that would not be possible. Please anyone help. I feel so bad, i was telling my husband I really want to come here because that is where I could probably get help, but it was a totally the opposite experience. I did read here that this is a good clinic, so does it mean that the doctor that I saw is just not good.

I am so confused and just want to cry. This is so not fair of doctors to treat us like that. We are driving for so many hours, waiting for month and month for this appointment and then such a disappointment. I was preparing for so long for this appointment, had prepared so many questions that i wanted to ask and not even one question was answered.

[jaddico]

Please take it easy. Sorry for your experience. I do understand how you feel. Navigating the health care system can be challenging. I guess if the doc there or your PCP knew ahead of time that you wanted to see other specialists at the time of your visit, then they may had arranged that for you before coming. Its hard to get appointments in such short notice with some doctors or clinics. Also if your insurance requires that you need a referral, then it has to come from your PCP, especially if this specialist did not find it warranted at the time of your visit. Remember testing negative at the time of your visit does not necessarily mean that you don't have POTS, especially if you are symptomatic. I have textbook Myasthenia Gravis and tested negative for the antibody which can happened and its known to do that. I'm sure POTS is also like that. Don't let one person's opinion on your health ever influence you. Seek another consultation, perhaps with my doctor who is closer to PA in Norfolk, Va Dr K Chemali ( use the "search" on this forum to locate info on him) Please stay strong. This is a starting point for you. Don't let this visit influence how you feel in negative way .

You should see how I'm walking now. I call it the "drunken Penguin". No one can miss it now but it took 2 years of various neurologists who told me anything was wrong and they couldn't see anything wrong with how I walked.I knew something was wrong and would not stop. Dr Chemali diagnosed me with Myopathy. Trust me, no one misses my ataxic gait. I'm still going through extensive testings. Please wipe the tears ( you need them so you don't get dry eye syndrome..its not fun) and put a smile on your face. I'm proud of you for taking the initiative to go this far to seek help. I believe in you and find a doctor that believes in you as well. Best wishes and please and have safe trip back home. This is not the end but the beginning for you to find out what is wrong. Let this visit motives and inspire you to seek further help. Thank you hubby and let him know how much you appreciate him for supporting you and going to the appointment with you although it wasn't what you expected. Keep us posted. BIG HUGS

[kay1964]

Hi gemma, I just joined the forum. So sorry for what is happening. i to went too went to a major hospital wanted to see dr.a, but ended up with dr b.i to had heard this was one of the hospital that would be very helpful for uncovering the reasons for my dsyautonomia/pots.for me I had 7 hour trip.family at home husband with me expecting to find more answers. I was given dr. b, I knew of him from my reading of the studies done on pots and dsyautonomia.he was very cool, no warm manners.he seen me after all my test where performed. I had QSART test done.and the blood volume test.and the other u mention on the supine standing.but again remember when I did finally see him after my test where all done and two days later, we did not have all the results in.my tilt table did show increase in heart rate.that he look at I was at 150 right away.but remember I went there with a diagnosis already of pots.he basically told me you have pots.no cure, he said if I wanted to know why then I could sign up for six week study.even then we may know if mine was primary or secondary. He said salt tabs of course and beta blocker and of course fludco.i informed him I was a pots patient that was sensitive to meds.bad reactions.he informed me if I was not willing to take meds.he was not willing to work with me.i too felt very disappointed but grateful for the test. any test whether it be your sweat test, blood volume test, have done so that it is one more to prove your diagnosis. Have you ever had a tilt test what where those number? just because your number at that time did not go extremely high does not rule out dsyautonomia.even dr randy thompson in Pensacola, Florida whom after this I seen said you do not have to have positive tilt if there is such thing to have pots.dont worry even your qsart will tell them if you have peripheral autonomic neruropathy involving your sympathetic nervous system which is consistent with pots.and that test result won't come in until a couple of weeks later . I'm sure they will set you up with a email address so you can see your test result.your blood volume test good one shows the blood circulation in your body.stay positive its your journey to claim your illness. I went to see doctro randy thompson in Florida. He recommended dr grubb in Ohio. So onward for me and my answers for my journey. now I know my spelling not good I'm up past my bed time I have brain fog but hope I have made since.hope I have help. By the dr. Randy thompson is excellent docter but too has pots and cant see patience thats why I have to go to dr grubb.and its only for more answers on hereditary pots my 30 year old son and grand daughter.

[Gemma]

Hi everyone, thank you so much for replying to my post. I was acualy told by many local doctors that I have POTS. Also, my neurologist at Columbia said even though my autonomous test at his office showed negative, I could still have POTS. But for some reason, Dr. at Vanderbilt said I showed negative and she highly doubt that my problem is dysautonomia. She said your BP is boarder line so you brain sends signals and thats why you have palpitations and increased HR. doesnt this mean POTS? Ohh well.
Also, for the referal, my insurance doesnt require referal. And the reason why I didnt make appointment earlier is beacuse when I initially scheduled appointment at autonomous clinic, I asked how they and if I need to see another specialist, the doctor will try to get me an appointment. The scheduling person said yes. But now the doctor refused. I came to hotel today after appointment and called cardiology and pulmonology and they said they have few spots but only for doctor to doctor appointments, so she needs to refer me. I dont understand why she told me they dont do it. She actually laughed at me and said, we dont do it.

I am in so much pain in my upper body, especially in the chest area every day. I so many specialist localy, cardiologists, rheumatologists, neurologists, but noone can figue out what is causing the pain. Rheumatologist says its some kind of inflamation in my body because my ANA, sedimantation rate, and WBC count is always elevated. I was hoping they will at least try to find out what is going on here , but its not happening I guess.

[Raisin]

I feel for you so much! Hang in there! I had seen many docs at A major hospital and got the , "the test was negative...so Bye" approach until I finally happened upon a neurologist that figured out the POts. We are all part, it seems, of a subset of folks that are searching and searching until 'Jackpot! ' ...someone figures it out. Even then, it becomes a further struggle to figure out the "why" of the Dysautonomia. I have been in your shoes and at times I still am in your shoes. Keep the faith. Keep the faith. Keep the faith. We are routing for you! We could all probably have a group discussion on a mystery diagnosis tv show. Keep going until you get the answers you need. At one point I actually said to myself that I would have to wait until for my arm to fall off or something before someone would look at me and say, "oh...you really don't feel well, do you?" if I could be there and hand you a tissue I would. I will say a prayer for you Gemma. Keep rocking' girl.

[corina]

Hi everyone! As it's not allowed to elaborate on a negative doctor's/hospital experience while naming them I have done some editing in your posts. I'd like to remind you of the rules re this subject, I've copied and pasted them here for you:

Doctors and Hospitals

You agree to refrain from making disparaging remarks about hospitals or medical professionals on this forum and to refrain from naming doctors or hospitals when elaborating on negative experiences.

Clarifications: It is fine to make a general statement, such as "I had a negative experience with Dr. ____ ," however, per forum rules, statements naming a particular doctor or hospital cannot be defamatory in nature.

Defamatory: "1. Harmful and often (but not necessarily) untrue; tending to discredit or malign."

You may elaborate on negative doctor or hospital visits as long as the particular doctor or hospital is not named, and therefore not defamed.

Unfortunately I haven't been able to send you pm's on what was changed in your personal posts and keep this more private as I'm in bed with a fever. Sorry for that and thanks for understanding!

[kay1964]

Sorry, I'm a newbe, didn't realize.

[gjensen]

Gemma, I can relate with the frustration while looking for answers. I know it can be very discouraging, but you are still compiling a lot of information. It is not all for nothing.

Keep your head up and keep plugging at it. I will be rooting for you.

[Gemma]

I appologize for mentioning names. I was so upset yestarday about my visit with this doctor. I just hope people read reviews before they travel so far with hopes to find answers and instead get even more confused and disapointed. I actually read reviews about this doctor on vitals.com the night before I went and they were horrible. I wish I would have taken them into concideration and would have saved time and money on this worthless trip. I am glad I had some testing done at least, and that is thanks to my local cario doctor who send over referal form for those, otherwise the doctor here at the clinic wouldnt have ordered anything. Even with the referal she still decided not to do some testing, like blood work panel and urianalisis. She said you did it before. Yes I did urianalisis before last spring of 2013 and it showed low aldosterone, so I would like to repeat it, but she refused to do this. Also, i asked her if she can check me for anemia and other vitamins, but she said no she doesnt think I have iron deficiency or other vitamin problems. This is so not true, i am so Vitamin D deficient that my rhemy put me on 50000 units one per week to boost it up.

Wow, i am honestly shocked and so disapointed with this visit. These doctors that give oath to help patients in a best way possible, should be punished and not allowed to practice. They are in it just for money. My husband already called my coordinator there to complain. Also, i plan on writting a written complain to director of the clinic about this doctor and her manners.

My suggestion to everyone who plans on traveling far away to some clinics, please read reviews and ask people around. Those reviews really mean a lot. I wish I would have taken them into consideration when I went to this clinic.

Thank you all who replied to support me.

[sue1234]

I am so sorry you had this happen at an institution that is well known for POTS research.

I had a similar experience when I went to a well-known institution's satellite place in a state nearer to me than their main institution. I went for hypoglycemia, saw an endocrinologist, and he was awful. He did one test that needed to be done, but as far as helping me get to the bottom of the problem, he just said that one test showed normal. It didn't matter that I STILL HAD THE PROBLEM, and had had it for 20 years. I always thought this place was THE PLACE to go to get a diagnosis.

He did refer me to neurology for my POTS, even though I didn't ask. They had me do a TTT, qsart, and breathing tests. According to them, I did not show POTS, even though my TTT the year before showed positive for "adrenergic POTS". I'm surprised they didn't test my supine/standing norepinephrine levels, as this was the place that was known for doing that.

Anyway, after the testing, I had to see the neurologist who really didn't have hardly anything to say. She did say, "Let's Google POTS so I can give you a printout on what it is"!! I said that's ok, I'm familiar with it.

I had 2 doctors that acted like they couldn't wait for me to leave their office. What is up with that? Where are the physicians that actually have an interest in health issues? I cried too after my week long appt. that was a 12-hour trip over there. I expected this was THE place to figure this out, and it was no where near my expectations(doctor-wise that is, as the hospital/clinic was awesome and very organized).

[Gemma]

Ok, so I just called the clinic to make a complain and was told by the lady there that the Doctor that I saw is leaving the clinic. No wonder she didn't care at all about me as a patient. This is so sad.

[Gemma]

I agree the clinic is organized and the staff is nice, but the doctor is really bad.

[sue1234]

How irritating! Now you know that she had such a noncaring attitude because she was leaving! That is wrong that you have had to have that appointment with someone who obviously isn't giving it her 100% because she's leaving. Can you maybe get a quick appt. with an internist there that may be able to get you to the people that you need to see?

[dkd]

Will they let you see someone else since she's leaving? I would at least ask. Sorry it's been such a disappointment

[Becia]

I went to my general practitioner yesterday for a follow up, and mentioned the trouble I had at the last cardiologist appointment. He told me I wasn't alone, several of his other patients he's referred to that office ended up with her, and they all filed reports about her, including himself. He's even gone so far to stop referring people to the office as long as she is there. Yes, there are amazing doctors in the office, but if that is gonna be their first impression, he'd rather send them elsewhere. I told him after she told me "We only have a few minutes to spend here, get to the point" when I was asking questions, it was gonna be on like Donkey Kong. I was NOT happy. I was to talk to her about my PICC line, and she refused saying why would I want something thats so permanent in my body (uh, to get fluids that I'm struggling to get now, what part of hydration are you missing Miss "You have Pots, you need this!") in , I mentioned that another clinic had mentioned maybe lowering the midodrine in an effort to control the headaches, she completely blew me off and said "You pass out, why would you want to reduce your meds?" Uh, because it being sky high has it's own issues, and I'm having a LOT of problems, can we not be a bit flexible, and work on something that gets me better? The final straw was when she proceeded to say "Well, I suppose since you are throwing up and nauseous all the time, you don't care to work out do you?" She wouldn't even let me finish responding before she just walked out of the office.

After my expieriences, and knowing others had the same problem, it makes me wonder if that's why she left the big name clinic she came from to come to us here in the sticks. She proceeded to remind me every time that she came from the clinic that suggested I lower my midodrine if I could, and "they would never say that."

so yeah, I've filed a report. I have an appointment with a new Cardio outside of the usual practice I go to. I'm essentially starting over from scratch, but my doctors are getting as much information over to them as they can, so he has a knowledge about my case before hand. The guy I'm supposed to see is actually my Moms cardio too, so that's nice.

Rough patches happen, mean doctors too. Here's Hoping you get the answers you need, even if it takes two or three times to do so. We've all been through the ringer.

[Gemma]

I would probably not be as upset if I havent came here from so far. 15 hours drive even though my husband drove is so hard, and all of POTS people can understand it.

I spoke to patients relations and they are trying to contact office manegers to see what can be done.

I am happy we took our dog with us, at least that cheers me up . We rented a condo here to make it a little more fun, like a vacation road trip with a benefit of visiting clinic, so at least I dont feel so down .

Thank you all so much for your support!!!

[Becia]

LOL, the doctor that did me in was only 45 minutes from the house, I was still just as mad. At least you got your dog, that does make a difference. I couldnt wait to see ours when we got home.

[rubytuesday]

I just wanted to say that I can relate to your situation as one who had taken decades to have been found to have orthostatic hypotension, autonomic nervous system failure, common variable immune deficiency + complex immune deficiencies, delta granule storage pool disorder, POTS and Ehlers-Danlos III. As certain conditions can only be verified by examination and a combination of history, family history and such, and some blood tests unavailable or uninvented back decades ago (when other tests were not proven) and with the immune deficiencies, blood tests could read negative but be false negatives and now being on weekly gamma globulin, they could read positive but be false positives. You have to be your biggest advocate. Don't let one specialist upset you so--you have been diagnosed by other health care professionals. They see you more and are more invested in you. Trust your instincts. My experience with the POTS/dysautonomia was also having to be on a year long wait list for a certain expert that my cardiologist was referring me to. I had a follow-up with that cardiologist about 6 months after the referral had been made and my condition had so deteriorated that my cardiologist picked up the phone and spoke to that expert himself--getting me in within 2 weeks. I dreaded the very long road trip. Since my tilt table test was negative twice (yet the cardiac physiatrist who conducted the second said that short of passing out, I met all the criteria of POTS and actually began different medications) I was sure it would be a wasted trip, (and upset husband for taking off work and driving me all the way up there) and feeling like I had a big 'Neurotic' label pasted to my forehead (like people tend to make us feel). But to my amazement, at that exact visit, my pressure dropped to the point of meeting orthostatic hypotension criteria. I don't know if it always did and even since POTS, sometimes my BP will go high (unusual for me) with activity. But maybe it was the call from my cardiologist. I had also kept a log using a website, grafting my BPs and heart rates daily for a comparison--when I would have episodes thru the day, I would also add to the graft in another color the range of the extremes of both. I took the graft to every heart doctor appointment and to the specialist. It gave them something more concrete (I also made note of what I was doing at the time of any 'event').

You know your body better than anyone else and you have to listen to that. Is it a very frustrating road sometime? Yes--but be persistent and don't ever dismiss something you know is wrong.

Best wishes and keep your chin up. This is just one little (albeit expensive) bump in the road.

[Gemma]

Ok. So to keep you all updated on this whole issue at the major clinic. Nothing was done the manager. Yestaday she promised to show my case to another doctor to review and also was going to try to get me an appointment with another specialist for other problems i had. She said she will call us by noon, because we told her that we need to know wether to check out crom hotel or extend our stay. So obviously she didnt call, we had to check out. We called the office to aks to speak to her but were told she will call back. 1/5 an hour later she calls back and says that she spoke to the same doctor that I saw and complained about and that the doctor said that nothing needs to be done at this point and that if my symptoms get worse I should come back in a year. Seriously, i am sick for over a year and a half, and she tells me to wait and see if I get sicker to come back. This is just so insane. I dont even know how to express my anger and my emotional pain.

[Katybug]

If you feel like you aren't getting anywhere in the clinic, and you feel it's warranted, you can file a complaint against the doctor with the state medical board in the state she is practicing in. Even though she's leaving the clinic, she may still be planning on practicing somewhere else in the state and people do look at the history of the state medical board complaints. I had a cardio that blew me off rather rudely at the beginning of my journey. When I found my current cardio, I found out that rude one had been fired from the practice of my new cardio for exactly the same behavior I experienced from him. I found out that he had several other complaints with the state medical board. Apparently enough complaints will eventually trigger an investigation.

[Gemma]

Thank you katybug. I found a webcite called department of health of the state where I was. It has an option there to file a complain about clinic or doctor. Is that the same as medical board that you mentioned?

[Katybug]

It could be. Each state is different. I would start there. You might call that department and ask them if there is a separate medical board as well or if they are the governing body that issues medical licenses for the state.

[tachyfor50years]

You sweetie, I'm sending you a hug. Blessings and best wishes to you. I am so sorry to read of your experiences, I know exactly how you feel, been there done that in the same exact center but with another doctor.

I am glad you had your husband with you, I was by myself (My husband is still in denial).

[Gemma]

Ohh, so sorry tachyfor50years. It must have been devastating to be there alone and experience this. I have calmed down a little. I am so happy I went there with my husband and my dog, this way we made it like a road trip and stopped at a few interesting places on a way back. Will be home soon. Cant wait.

Thanks all for support. I really, really appreciated. Today was a new day, good weather and I am glad God gave me strength to visit some new interesting places on a way back home. Life is beautiful .

[rubytuesday]

Hi, Gemma.

You have the right attitude in picking yourself up and dusting yourself off after that ordeal. My pacemaker was put in in Dec. 2012. It was put it at a hospital far away from home (my cardiologist referred me to a specialist in dysautonomia there 1 1/2 years prior). I had my first pacer check done at the same hospital in Mar. 2013. Then with that specialist's permission and investigation/coordination on my part, I was able to get the device monitoring done by our local cardiology group. The first time was done last Fall by the nurse. Monday I had another 6 mo. check only this time by the cardiologist (they alternate visits between nurse once then doctor and rotate each visit). So when cardiologist comes in to meet me--he thought I just had the pacer as he proceeded to tell me how the nurses would tell me about hooking me up with a telephone transmitter (mine transmits wirelessly overnight). Then he proceeds to ask me all about who diagnosed me with POTS (2 cardiologists in his group, and my PCP). Then he asked how I ended up at specialist at other end of state (cardiologist referred me when things progressed and I just wasn't responding--all should be in the records as seems like most of the visit w/ the cardiologist they are inputting info in the computer while they talk to you--sometimes with their backs to you). Then he asked if that specialist was in Columbus (the specialist is up way north of that and is fairly well known in his field). He asked if the specialist concurred (I had this appointment scheduled for 6 mos and obviously he hadn't taken one minute to review any of my records even from his group). I wondered why he thought I was sitting there with a pacer.

I intentionally did not have my morning cup of coffee before the appointment, nor did I take the morning meds (that increase my BP) as I wanted him to see me as I typically would be without either. Thankfully again (and a bit to my surprise), the blood pressure was really low--and the nurse double checked by doing both arms. So this doctor did acknowledge the hypotension. But I described instances and events where the BP goes unpredictably high (since I wanted to discuss the medication I take). He very patiently explained he did want me to continue with my medications to raise my BP even if it does go too high from time to time as that is the very nature of the dysfunctional autonomic nervous system.

I hope this doesn't discourage you. I used MedHealth.org to track my BPs and heart rates, then print off the graphs from visit to visit. If I had big ranges, I would add those in in a different color and journal what I was doing. I think that was another tool that helped the physicians see what is going on and how often (some seem to rely on hard data). That graph also logged the high, the low and the median of BPs and HRs. I am sure that it also helped (when seeing the specialist up north) when my cardiologist took the time to personally call him and discuss my case.

As this 'new' (to me) cardiologist was questioning me, I told him how it began and how I'd dismissed the first 2 or 3 episodes but if memory serves it was around Jan. 2009. And here I was having to go back over the whole thing again. I would not advise anybody not to take his/her medications, but I stay away from caffeine and my meds for the dysautonomia just until I get that office visit in (as long as I feel I can tolerate it). Still with the dysautonomia--one never knows. You would think that a specialist in the field (of all people) would be the first to understand this.

I'm glad you got home and were able to see some interesting sites. You deserved to be indulged after that. I feel terrible when DH has to take the time off work and get up at o'dark thirty (he never wants to get hotel) and do all that driving when he has health issues of his own. We have to jump through enough hoops and have people think we're neurotic or lazy--especially if 'we look so good'.

Best wishes to you.